Award-winning journalist Ellen Gabler visited campus Tuesday, accompanied by three professors and the director of the Utah Newborn Screening Program, to lead a panel discussion about deadly delays in processing newborn blood work and the severe risk these delays can pose to newborn health.
Gabler’s investigative series on delays in newborn screening published in the Milwaukee Journal Senteniel led to reforms at hospitals throughout the country. Her talk focused on options to improve the screening process and how hospitals and institutions can implement these changes.
Newborn babies have blood drawn to test for rare diseases immediately after birth. Though the blood work is sent to labs, the process of sending and screening is often drawn out unintentionally, leading to delays.
Gabler started the panel by discussing her interest in the transparency of public data as well as her inspiration for beginning this investigative series. She said one of her colleagues at the Milwaukee Journal Sentinel brought in a story about a child who almost died because his blood work screening was delayed.
Gabler said she realized this delay could be happening around the country, adding that she believed hospitals as well as state governments needed to be held accountable. She insisted institutions analyze how quickly these newborns and their parents get the health information they need so rare diseases can be addressed.
“Holding people accountable is how you make change,” she said.
Throughout the investigative process, Gabler said she often struggled with getting data from certain states and that governments did not always want to share their hospitals’ lapses in responsibility.
“It’s simply not OK for governments to just say ‘listen we’ve got this handled, trust us’ and that’s kind of what they were saying, and that’s just not OK,” she said.
Throughout her talk, Gabler also discussed improvements made across the country because of her investigative reports. Prior to her work, she said Arizona was one of the worst states in regard to timeliness of screenings, but after her series was published they had a 30 percent improvement in efficiency.
Panelist Edward Goldman, a lawyer and associate professor in obstetrics and gynecology, spoke about how the newborn screening process is multifaceted. He said because of its complicated nature, addressing the issue requires analysis of every aspect of the process.
“The testing is for rare conditions with significant medical implications, as you’ve heard,” Goldman said. “That means testing has to be fast, it needs to be accurate, it needs to be returned to physicians who understand the testing and can act on it to provide treatment. That should show you all the places where this could break down.”
The panelists discussed the screening process from many different perspectives. Sharon Kardia, senior associate dean for administration and professor of epidemiology, said one important problem to consider is the monetary pressure on health departments.
Andreas Rohrwasser said he has only been at his post as Newborn Screening Laboratory Director in Utah for one year, but the change he has been able to invoke in what he calls the “Post-Ellen” era, has been immense. When he began his job, he noticed there was already momentum to raise the standard for screening efficiency.
“The field wanted change, and I was ready to do some changing,” he said.
He said prior to his post, the Utah screening center was only open five days a week, delaying screening over the weekend and causing sick newborns to get sicker. Now, the center is open every day, allowing for a much smoother process.
The panelists concluded the panel by emphasizing that these newborn tests detect rare diseases and many pediatricians are not familiar with them, creating more room for error. Gabler said she had talked to parents who noticed abnormalities in their babies, and had doctors reassure them that everything was fine when their children were sick.
In addition to parents opting out of tests for religious reasons, individual states have control over which tests they conduct on babies, which can further complicate newborn health.
In an interview following the event, Gabler emphasized the importance of these tests and said patients can better advocate for themselves in these situations and demand the truth about the timeliness of their children’s screenings.
Public Health student Matthew Fillare said he found Gabler’s work impactful and important.
“It’s pretty cool that this is such a non-politicized subject as well, like it’s pretty easy to get people behind saving the lives of babies,” Fillare said. “It’s pretty objectively easy to do. Like someone said on the panel, sometimes journalism can have more of an effect than legislation.”